Over the years I’ve heard it all, from “Are you sure she has Autism?” “..but, she seems so smart.” and my favorite, “I’ll pray for you.”. No matter how much time passes, it never fails, someone unintentionally (I assume.) rubs me the wrong way. Instead of getting mad, and wasting my energy on people’s ignorance, I chose to put together a few comments and suggestions I could do without. However on the flip side, I do understand that a majority of people don’t realize they’re being rude or hurtful. And my only hope is that I can help clear up why some of these seemingly innocent remarks can be hurtful. Behold, 6 things you should never say to an autism parent-ever.
“I’m Sorry.”- The last thing you want to hear upon telling someone your child has autism is, “I’m sorry.” While it may be an understandable and honest reaction, it’s extremely hurtful. Saying you’re sorry about my child is like saying there’s something shameful about having autism. Or that you pity me because ‘unfortunately’ my daughter has autism. I assure you we are extremely proud of our daughter. The only thing I’m sorry about, is that the world can’t be a more understanding and accepting place for her and others alike. Instead of apologizing for my child’s existence, try engaging differently. Asking questions and showing genuine interest won’t offended anyone, I promise. You can ask about their child’s interests and what autism means for their family. If ASD isn’t something you’re familiar with, let them know. This can be a learning experience and doesn’t have to be awkward.
“I Don’t Know How You Do It.”- This bothers me for numerous reasons. Mainly because it’s offensive. What I hear is that you pity me for being subjected to ‘unimaginable’ circumstances, when truthfully if faced with the situation, you too would rise to the occasion. Everyone thinks they aren’t capable until it happens to you. So telling me how I’m a super mom because I manage to love and support my kid, who happens to have autism isn’t a compliment. And I know this comment is meant to praise me on how ‘hard’ things appear and at times actually are, just know it doesn’t sit well. I don’t want my child to be made to feel like some burden on me, when that’s the furthest thing from the truth.
She’ll Eat If She Gets Hungry Enough.”- Actually she won’t. This is so frustrating for so many reasons. A lot of people aren't aware that autism usually comes with some co-existing conditions, like sensory processing disorder. Every meal is either a struggle, a pleasant surprise, or me begging my child to swallow her food or eat. Unless you’ve had to have your child on a specialized diet, or your child has an extremely limited diet, or your child is unable to feed themselves independently, you just don’t understand the heart break. Take a second to imagine having to watch your child’s weight drop drastically, endure G.I. issues daily, or seeing your child struggling to swallow their food, and gagging while trying to eat. I know your advice is meant to helpful, but know it’s just extremely frustrating.
“She Doesn’t Look Autistic. Are You Sure?”- This is the most common response I receive after telling someone my daughter is autistic. “She seems normal to me.” Let me break this down for you. Telling me my child doesn’t ‘look autistic’ for one is a back handed compliment. This isn’t a compliment. I repeat THIS IS NOT A COMPLIMENT. Besides clearly having an extremely narrow view of what it means to have a disability (an invisible one at that.), you’re completely minimizing a person’s autism. You’re minimizing the hard work it takes to ‘appear normal’ to you. Please don’t minimize my child’s autism. It has taken many years of trial and error, a series of therapies, and an ocean of tears to be where we are today. Receiving a diagnosis isn’t as easy as you’d think because autism is such a vast spectrum. Some people have spent years just to finally receive a diagnosis and support. Autism is every day. There is no off switch, just better days than others.
“She’ll Talk When She’s Ready.”- This has always been painful to hear, especially knowing a large number of people with autism are non-verbal. Coming to terms that you might not ever hear the words ‘I love you.’ or ‘mama’ is tough. It’s something most parent’s won’t ever have to think twice about it. It’s the kind of thing you just have to take one day at a time. Now imagine strangers and family members in denial of your child’s autism, bombarding you with unsolicited advice. The uncertain future is hard enough to combat, the last thing I need is someone chirping in my ear, “Don’t worry she’ll start talking when she’s ready.”
“She’ll Grow Out Of It.”- No, no she won’t. And that’s okay. I understand people say this for numerous reasons. Either they don’t understand autism is a neurological disorder that generally comes with other co-exsiting conditions, or they’re in denial. Not that children on the spectrum can’t flourish through therapies and hard work, but overall these services exercise and better a person’s the ability to cope, resolve, and redirect in an appropriate way. You can’t cure autism and you can’ just re wire someone’s brain to work a certain way. Autism doesn’t just vanish, so when you ask me “Is she still autistic?”, you’re essentially wishing away something very much apart of her whole being. I don’t love that my child has autism, but I do love my child as a whole.